Yesterday I read a short piece in Psychology Today (June 2019) called, “A Trick of the Mind.” The article introduced the words, nocebo effect, and the more common placebo effect regarding an experiment conducted by Brad Turnwald, a doctoral student at Stanford University and the lead author on the study they reported on.
The article was about an experiment where they told people that they were either predisposed to obesity or that they had a gene that protected against it. They tested the groups by having them exercise before they were given the genetic information and after. The people who believed that they were predisposed to obesity had a decline in performance on the exercise test after being given the negative information and the people who thought they had protection against obesity performed better.
Most of us are familiar with the placebo effect because we have heard it used in medications studies where people are given a sugar pill and feel better based on their expectations and possibly hope. I had never heard of the opposite, nocebo effect, though. Meaning those who are given negative information/expectations do worse.
When I received the diagnosis of schizophrenia, the doctor said, “I have bad news for you.” For over a decade I had lived with the belief that I had bipolar disorder and no one had ever said that was bad news. I had episodes of psychosis, and when I would fully recover, I would go back into the working world. I traveled and had lots of friends. I hiked. I played racquetball, practiced yoga, and I lifted weights. I had many friends and sat on committees for the city and graduated from an intense year-long leadership program. I regularly took classes to increase my knowledge or for fun.
My life looks completely different now. I have developed an anxiety disorder. I have a lack of motivation (different from being lazy), I can’t seem to find a job that I can manage (I apply for work regularly). I have fewer friends and am involved in far fewer activities, and the activities I am involved in are almost always things I do alone, like take a walk or write in journals. I have lost the motivation to make and keep friends.
I wonder if my psychiatrist had told me, “You have schizophrenia, but it isn’t going to make a difference in the way you live your life,” if that would have made a difference? I wonder if celebrities came out and said, “I have schizophrenia or schizoaffective disorder,” if that would make a difference? I can count the role models who have schizophrenia and are relatively famous (and only famous inside the mental health community, not the general population) on one of my hands. I can’t count the number of times I had read these words from parents when their child received a diagnosis, “Every parents’ nightmare.” I can’t count the number of times I have read that the average life expectancy of someone with schizophrenia is over 28 years less than the general population. I can’t tell you how many times I have heard jokes, seen stereotypes in movies and portrayed on the nightly news. I can’t tell you the number of negative messages I have had to filter through my brain and soul since I received the “bad news.”
I wonder, I really do wonder if the way we presented schizophrenia wasn’t so dire if people’s outcomes would improve? The studies done on placebo and nocebo seem to suggest they would.